Upstate State of Mind 2.0

Upstate State of Mind 2.0

About a winter ago I did a winter-themed series of watercolors based mostly in Upstate NY for an exhibit at a local café. winter light put me in a wide awake state of mind.

The last few weeks, punctuated by wild storms, figurative and literal, have my mind wide-awake and not always in a good way. Still, I embrace the turbulence. Buffeted by winds, we’re traveling back from the grocery store in Greenwich, New York, hardly able to see the green mountains ahead of us, we’ve spent the summer with our hairs on end and our fists clenched as we sit on the edge of our seats, perversely feeling more alive — more cognizant of life — than we ever could under a crystal clear sky.

Fair not Fair

Total Tear Down

Last night complications from his colonoscopy combined with his shaky condition warranted a call to Thing1’s doctor. As I waited for the pediatric G.I. on call I thought, as I have more than a few times since this journey has begun, how well he has had to learn one of life‘s most important lessons.

A younger sounding woman got on the phone and asked his latest symptoms. She sympathetically told me to monitor him through the night and gave benchmarks for when I should take him to the emergency room. I hung up thinking, as I have many times over the summer, how incredibly lucky we are.

Several times over the summer we have visited Dartmouth-Hitchcock to have iron infused or blood transfused. The infusion rooms accommodate two patients at a time, and while I don’t subscribe to the idea that misery loves company, company often gives the gift of perspective.

A young woman was already in the second chair when we went to the first iron infusion. She told us that she had just been switched to a new biologic to treat the ulcerative colitis that had plagued her for almost a decade.

“Yeah, I was just in the hospital for three months,” she told us, her tone sparkling with sarcasm. “My insurance brilliantly kicked me off my old drug that was working for three years, and I went into the worst flareup of my life.” She went on to tell us about all the longterm hospital stays and the drugs she had tried over the years, including a brief but successful stint with medicinal marijuana that ended catastrophically when a new job told her that a positive THC test what get her fired. She told us how great T1’s new drug had been for her and how that success had also been interrupted when an insurance company dropped coverage for it.

“Assholes,“ she and the nurse who had just come in to load T1’s IV said in unison. They each sounded a bitter laugh. She said considered she still herself lucky because she was able to get care. No one in the room needed to be reminded that there are plenty of people without adequate care and some with little or no care.

Through all of the tests and infusions and diagnostic procedures, T1 has had access to the best possible care, and we owe that access almost entirely to good luck. We found his pediatric G.I. through a connection with my father, a retired pediatric G.I. who still consults and is engaged in research around the world. We were able to transfer his referral to that hospital because I lucked into a job that not only covers 100% of our health insurance premiums in a good plan but fully fund our co-pays and deductibles, fundamentally changing our healthcare strategy for him to focusing on the quality of care.

I work hard at my job, and I love the company I work for — not just for the insurance but for the people. Every day, however, I realize that finding this company that protect its employees so well was a stroke of luck. If I were still at the previous job, my insurance would have conked out after I picked up the first $800 a month prescription. every day, I also realize, that finding the right person for the right treatment should not depend on knowing someone who knows someone.

Every once in a while as we’re driving home, when T1 is feeling particularly tired, he’ll try to divine the cosmos and figure out what he did to deserve this. he never got in trouble at school. He’s always willing to help, and, as he has reached adulthood, has taken it upon himself to watch out for the needs of the people in his life. So he’ll wonder aloud if he could have played fewer video games or done more homework to prevent karma from leaving him so incapacitated. It never takes more than a mile or two before he says the kind of thing that makes me most proud of him.

“I don’t deserve this. Nobody really deserves this,” he’ll say. “I wouldn’t even wish this on somebody who had done something really bad.“ About the time we’re passing the Quechee gorge, he’ll usually confirm for me once again, that he has learned when the most important lessons in life.

“Life just isn’t fair.“

Driving home from that infusion, however, we talked about how funny and bright that girl in the infusion room was. We talked about how it wasn’t life but a system made of people making conscious decisions that resulted in an unfair reality where drawing the lucky paycheck card lets one young person focus on the quality of their care while an equally hard-working and promising young person spends a disproportionate part of her life fighting for the access to the bare minimum care just keep herself alive and out of the hospital for most of the year. We both understood that, there but for the grace of God and the system, T1 could be in her chair.

Thing1 has accepted his illness. We all have. We are all understanding that being ill has nothing to do with fair or unfair. What each visit to the infusion lab and each conversation with other patients at the hospital has taught us is that much of the unfairness in life is the result of the world we have made. It didn’t just happen.

Next week or next year, Thing1 will be going into his adult life. He understands that often the world won’t seem fair because it isn’t. What I’m hoping this experience, what these perspectives gained from the company we’ve been keeping, will teach him is that the system will ultimately be as fair or unfair as we decide to make it.

The Etsy Bitsy Bookshelf Shop

The Bookshelf Gallery – ceramic owl by T1

All practice on long-term projects has pretty much ground to a halt lately. The only writing that happens over the last few weeks is on my blog. What has been going bonkers (Aside from the usual mayhem at our house), is the mini gallery that springing up on my office bookshelf.

I don’t know why, but for me, painting is more powerful than Prozac. It has the added bonus of being a series of short term projects which is – oh look at the cute little kitty – great for somebody with Omni-directional Attention Disorder (attention APA, I want credit when this disorder is officially diagnosed and named).

Normally, the summer is Art fair season for me, keeping my already “cozily” full shoebox of studio from overflowing with paintings. I switched to working weekends over the last year, however, and art fairs (with the exception of the Fall Open House at Bedlam Farm which will be pulled from my paint-covered fingers after the kids have me committed) are on hold indefinitely. Vermont has an open studio day, but I’m pretty sure any good liability lawyer will warn me of the dangers of inviting non-hazmat certified art lovers to trek through our house to my bookshelf gallery.

I haven’t done a lot of online sales because handling things like sales tax and shipping costs have always been more complicated tasks than I wanted to manage on my webpage. On my weekdays off, though, I’ve been watching the success of friends on Etsy and decided imitation is the sincerest form of flattery.

So, for the last few days, I’ve been setting up an Etsy shop. I haven’t made too much fanfare yet, aside from a couple links, but it seemed appropriate to announce a “Grand Opening” on this page now that there are more than 2 paintings up there (I have 4).

I’ll be adding notecards and watercolors, as well. Wood stove season is coming, and oil and open flame seem like they may be a bad idea, so the selection on here should evolve a bit with more watercolors.

For now, I’m dipping my toes in the water, and, having missed beach season (not a big loss since I don’t really like the corequisite swimsuit season), this seemed like a fun way to end the summer.

You can find my new shop here.

Ways Forward

7A at 7

Yesterday we made our semi-weekly journey to Dartmouth for Thing1’s endoscopy. It’s 4 days before launch day, and, at 9:45 AM yesterday, lift-off for college was anything but guaranteed.

I walked him into the pre-procedure room in the endoscopy unit and waited while he got changed and settled on his gurney. When they came to start the anesthesia, I kissed him goodnight and went to wander through the hospital, a restaurant pager in my pocket to let me know when they were done.

I went back less than an hour later. The doctor was already in the waiting room looking for me. The look on her face was as telling as the pictures of T1’s colon that she had printed. That was all the proof that the last eight months of injections and diet management, pills and fighting with the insurance company had done little to put the brakes on the progression of his disease.

We talked about the next steps – a new drug that might work or not over the next four weeks as we work to get him healthy enough for the surgical nuclear option. T1, the Big Guy, and I had already discussed the very real likelihood that T1 will be withdrawing from college in January, but, as the doctor talked, I realized that trying to start in 4 days was risky at best.

The doctor had to go to another colonoscopy but said she would meet with us in recovery in an hour. I went into the little corridor between the waiting room and the endoscopy unit and stopped to lean against the wall and cry. Even if his academic future had not been thrown further up in the air, the images of blackened tissue would have made me sob, and there was no way I was going to do it in front of him.

I wiped my face and slapped my cheeks to reset my expression. Then I went into sit with T1 as he woke up. When he asked the results, I was honest. He has been going through this for too long for us to insult his intelligence by sugar-coating bad news.

After another uncomfortable conversation with the doctor, however, it became clear that T1 had already done the mental calculus to try to manage the next drug failure long enough to get through the first semester. He was still planning for lift-off on Friday.

My stomach clenched as I imagined him driving himself 2 hours to the hospital with his uncontrolled flareup or more anemia. I knew I could use the maternal bully pulpit to push him into what I see as the ‘right’ decision, to delay his enrollment for a year and get healthy enough to have and recover from surgery. I also knew that where a year’s delay for a 50-year-old is a few minutes, it can seem like a lifetime in a life over which an 18-year-old is just starting to take control.

He officially became an adult two weeks ago last Sunday. The decision to have life-altering surgery, the decisions about which drugs he’ll try next, even the decision about how to start the first phase of his adult life are now ultimately his. We can advise him, give him our opinions, but we can’t make those decisions for him.

It’s three days till launch day. We’re still trying to make sure he has all the information he needs. I haven’t stopped advocating for the safe option. The Big Guy, of course, has his own opinion about the situation and will certainly weigh in. I am starting to understand, however, that accepting his disease is acknowledging that not only do we have little control over it, but we have to start ceding control over how T1 will respond to it or any other part of his life.

Acceptance isn’t the same thing as surrender, and it isn’t always accompanied by hope. It is a way forward, and no matter where he is going, we will have to begin that journey by starting to let go.

I’m Five

WIP

So I’m testing a new theory that as you approach the start a new decade your tendency to act your age diminishes by a factor of 10. At least on some fronts.

I’ll be contributing the following as evidence to my future peer reviewed paper about how infantile behavior at the tail end of your forties can be a blast: whether or not you’re supposed to, I’ve started fingerpainting when I making skies in oil paintings. Go ahead, you can say it. I am officially five again.

From the Source

From the Source , 4×6, oil

We moved to Vermont when T1 was just a baby. One of the first places we discovered On our exploratory drives was the Wilcox Dairy ice cream stand, parked in the driveway of the dairy farm itself.

 

The woman who owned it had a son same age as ours. I love seeing the little yellow stand when I drive to the grocery store and picturing T1 and his friend toddling around the garden she’d created for people to sit in.

 

She’s moved on, and so have we.The garden is gone, but a little yellow stand in the old dairy truck remain. It’s still one of the best places to get ice cream because it’s 10 feet from the source.

A Meeting of the Group W Bench Salon

In the Studio by Maria Konstantinowna Bashkirtseff

Remember those couple or three kids in first grade who were always giggling in the corner? You know the ones – they had to be shushed and then separated because when they were sitting together, everything was funny. It wasn’t published in the newspaper, but there was a small reunion of that group in Cambridge, New York on Friday night, a rearranging of the Group W bench at our family’s favorite Italian restaurant as it were.

A new friend, a photographer who has recently moved there, invited me and another friend, an illustrator from northern Vermont for dinner at our favorite (the only) Italian place in Cambridge. The instigator was well aware that the other Vermonter and I have reputation in some circles for being the giggling kids in the corner, so she knew what she was getting into. A few people at the neighboring tables clutched their pearls as we chortled our way through drinks and bread, but in between the screeches and cackles, we managed to solve the world’s problems before talking a about our own issues.

It was a great way to cap off my very short but deliberate weekend. I’d been trying to get to the Clark museum in Williamstown, Massachusetts all summer to see an exhibit of women artists in Paris from 1850 to the early 1900s. The boys, having developed a resistance to art museums thicker than MnM shell, made it clear that they would only go if Indian food was on the menu at the end of the visit, and I knew that, even then, I would spend as much time Fending off queries of “can we go, yet?“ as I would actually enjoying and learning about women breaking down barriers. The show ends next week, so, making sure there were no trips to the hospital planned or chores that needed to be done before noon, I headed out the door as soon as I got up, leaving T1 in charge.

I expected to see mostly Cassatt and a few lesser-known impressionists, and they were represented in the collection. The wonderful surprise, however, was the breath of work hanging in the basement gallery of the museum. In an era when most women led hidden lives, the 19 or so artists represented in the gallery had worked within and against the salon system, had painted impressionistic views of family life, amazing examples of classical realism, and covered subjects as wide ranging as still life tea sets to great historic events. Some women had the support of their husbands or families, but many had to go against the grain just to acquire the training they wanted. Some had to get permission to wear men’s clothing in public so that it would be safe for them to paint plein air. They had to get permission to join classes for life studies and to create content outside the domestic sphere. Absent family support, many of these women found encouragement from mentors and frequently from fellow female students sharing the same creative boat.

Friday night, As the photographer, painter, and illustrator sat laughing about our own creative and life goals and venting about the obstacles we have faced, we inadvertently formed our own little salon system on that Group W bench where T1 and T2 normally test out the finest fart jokes in the Northeast. My illustrator friend teased me good-naturedly as the dinner ended, saying as soon as I got home I would be painting again, and she was right.

Sometimes I paint when I’m frustrated, sometimes it’s just meditation. The best painting times come after a storm or a brush with something really good, like a silly dinner with some equally silly friends, always ready to encourage each other, carrying on a tradition of female camaraderie that has a pretty good success rate.

There will be future meetings of the female contingent of the Group W bench.

Knowing Mountains

I spent our five hour round trip to Dartmouth Hitchcock yesterday really looking at the mountains as the sun sink and then disappeared behind the greens and then the Taconic. I brought the mountains back into the studio with me to finish painting I started a day or two ago.

I think I’m like most painters in that, when I’m doing it, I feel that this is the only thing I should do with life. Then I have doubts as to what exactly yet another painting of the Vermont landscape contributes to the world at large.

I was googling a few technique videos when I ran across an essay singing the virtues of representational art, including landscape painting, in the digital age. One of the points in the essay was that so much of painting in the modern age as much about a familiarity with paint and brushes and technique as it is about an intimate knowledge of mountains and trees or the lines on a person’s face.

I’m still acquiring my knowledge base of paint and brushes, but I felt sad for that part of the world that hasn’t burned into its psyche the soul-restoring power of white-gold light falling across mountains about to go from green to red and gold or the arousing energy of a summer storm churning across a valley. Suddenly each attempt to capture the awesome and the inspiring seemed worthwhile, even if it is a step towards being able to successfully share it with someone else.

5:30 AM

 

I set the alarm for 5:30, and for the first time this summer I didn’t hit the snooze button when it went off. T1 and I are staying at a little tourist motel near Hanover New Hampshire. It has a lovely view of the river, and the only update to the motel since the 1970s seems to have been the addition of a 40,000 inch flatscreen TV that occupies most of the usable space in the room. I got up early to grab a shower, laughing hysterically as it became clear that the chrome fixture with the temperature control label was purely aesthetic. it’s not the Marriott, but I don’t think I would’ve had such a giggle there, and we have to be someplace to be at seven where a little levity is necessary.

For most of the last few months of been too tired to get up at my normal time. We’re still driving to the hospital every week or every other week. Today, we have to be at the lab to get him typed and a blood transfusion. None of the six medications he’s currently taking are controlling his inflammation, and he’s been anemic long enough to affect his vital signs. Our doctor was frank with us that his case Is severe enough to warrant a conversation with a surgeon today once we’re done with the transfusion.

T1 has been a rock through every diagnostic procedure and prescription, but recognizing that the surgical option, which could turn out great but also could leave him with a bag for the rest of his life, has been moved from the back burner to the front spooked him. Normally quiet and introspective, he’s been talking about implications and benefits.

We all know this could torpedo his college plans for at least a semester, but none of the conversations involve him asking, “why me?“ Once again, I think to myself how proud I am of him. But when I’m alone, when I’m driving in the car where no one else can see — even though I know these things aren’t about who deserves them and that there are other people with exact same disease are in much worse situations — I cry.

I once wrote how, thanks to a poorly planned and executed school assembly on teen suicide, I suddenly realized that everyone else in the world did not walk around thinking about suicide at least once a day. I did — and still do.

Death has been one of my back burner options for as long as I can remember. Most of the time it’s barely simmering partly because the front burners have been really occupied and partly because I’ve never settled on the right recipe.

Picking a recipe takes consideration and some focus. It used to be the kind of thing that had me saving coupons for sleeping pills. Now it’s the kind of thing I debate while driving home, wondering how to fake an accident so the kids wouldn’t have the knowledge that their mother had willingly left them. It’s also the sort of muddling that is easily interrupted by weighty questions like “what’s for dinner?”

I learned a long time ago that not only were these debates not normal, but they were part of bipolar disorder which had been presenting symptoms since I was two. Like T1’s illness, bipolar is sporadic in its intensity but permanent.

Most days in my car, the tears are exhaustion as much as they are grief for the senior year activities he’s mostly missed, the job he had to quit, and the plans he may need to delay. They are always mixed with pride. What has surprised me this year is that the tears never accompany nor are accompanied by resignation.

My back burner option is still there. Weekly drives to the hospital, work and fully caffeinated creative time, however, have deprived the pilot light of the attention it needs to stay lit. His illness doesn’t make mine go away. I’d keep my debate boiling on the front burner for the rest of my life if it could spare him one more week of pain and fatigue, but there’s a great thing about T1, about both boys.

Even when their antics can’t get through a wet blanket of a depressive episode, they do make my life better. They give it purpose when all other purposes in my life have become trite or meaningless. That purpose switched off the alarm this morning instead of hitting the snooze, and, with the aid of a bit of maniacal giggling under a trickle of shower water that seemed to flow alternately from Alaska or Mt. Vesuvius, it helped send a thoroughly unproductive debate down the drain for the day.